Testing Question

[GlutenFreeAustinite]

Hey everyone,

I got blood tested for celiac after a month of gluten challenge last week. I called my doctor and some birdbrained nurse answered and she told me that "my numbers were within the normal range" on all four of the tests the clinic ran. I plan to call back tomorrow and clarify exactly what tests were done, but do y'all have any suggestions for other tests I can ask for once I find out what has already been done?

Also, the nurse told me that they "looked pretty normal to her" but that the doctor hadn't looked at the results yet--they were in a pile on his desk to go through tomorrow. So I'm not really sure how to handle the whole situation.

[sa1937]

I'm assuming you have a follow-up appointment with the doctor to go over the results. At that time also pick up an actual copy of the test results and go from there.

I'm surprised the nurse told you anything...the most I ever get is that they can't tell me anything as the doctor hasn't seen the results yet.

[ravenwoodglass]

IMHO the more important question is how did your body react to the challenge? If you saw a return or increase in symptoms you have your answer no matter what the results of the test were.

[Cara in Boston]

Not sure how long you were gluten free before the challenge but every doctor I have had recommends a 4-6 month challenge . . . one month does not sound long enough to be able to trust the test results. If you felt better gluten free, stay gluten free.

Cara

[roxieb73]

Not sure how long you were gluten free before the challenge but every doctor I have had recommends a 4-6 month challenge . . . one month does not sound long enough to be able to trust the test results. If you felt better gluten free, stay gluten free.

Cara

Ok I find this very interesting I went gluten free for between 3 to 4 weeks before I took the antibody test as a result my doc thinks we got a false negative. Now I am eating gluten again but said we would retest at 4 weeks. Would that be enough time considering that I only was gluten free for about the same amount of time?

[MitziG]

There really isn't any way of knowing Roxie. Everyone is different, and it depends on how high your antibodies were to begin with. I had advanced celiac, yet my antibodies were barely positive, only 6. They dropped within days. Someone whose numbers are in the hundreds may still test positive a year after going gluten-free.

[Cara in Boston]

Yeah, my blood went from positive to negative in just 10 days . . . did a gluten challenge, only made it two months, but by then my symptoms were all back and my son had been diagnosed so I gave up. My blood test was still negative.

My son, however, was still highly positive after 6 months being gluten free - and he has almost no symptoms.

Weird.

[roxieb73]

Well you ladies are all just full of sunshine and happiness today. lol At least you don't sugar coat it! Guess I will just pray for a positive! At least I can be fairly confident that regardless of outcome my symptoms along with my wonderful ugly leg rash tells me I have it even if they can not prove it. I know I felt better gluten free even for the breif time I did it. I can't wait to go back to starting to feel better again. Right now feel like I am spiraling out of control. Each day so much worse than the day before. Just need to get through about 4 more weeks.

[GlutenFreeAustinite]

Yeah, I'm at a loss too. Got the official call saying my tests were normal. No follow up...for whatever reason, my doctor doesn't do this. I can always make an appointment, or request a copy of the test. At this point, I feel stuck. I feel *awful* on gluten (D, stomach pain, gas, bloating, neuro-stuff, constantly either feeling starved or extremely full)yet I was surprised when my doctor said only a month, because I had always heard you need it for like 2-4 months. Should I bother getting biopsied at this point?

I'm seeking an official diagnosis because of college...they are much easier to work with if you have official paper. I'm worried if I just say that I'm gluten intolerant, I'll get lumped with all the fad dieters. Whether it's celiac or NCGI, I don't really care, though my gut here is that it's true celiac. My family has a history of health issues I believe are gluten-related, and I'd prefer to find out if I have an autoimmune condition now. I ate gluten for 15 years before any symptoms showed, so it's possible it would be hard to get me to test positive.

Any suggestions on how to pursue this?

[Takala]

You go to the doctor's office in person, and you tell them you are not leaving until you get a copy of the lab's test results, which you know they have already because the office told you this.

A month back on gluten wasn't long enough for you. YEARS on gluten wasn't long enough for the rest of us, and some of us had extraordinary levels of damage that was all classic celiac or gluten related enteropathy causing neurological problems, except for the weight loss. It happens.

Did anyone think to test for IgA deficiency, which can skew the blood test results ?

I think one option is to call yourself GSE, or having Gluten-sensitive enteropathy, if you need a label to toss around.

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[GlutenFreeAustinite]

I'm thinking I will. I'm not sure I want to stay on gluten for 4-6 months..I already feel so miserable, and that would collide headlong with my first semester at college. I'll go to his office and ask to go over the test results. Any ones in particular I should look for?

GSE? From my other research, isn't that another name for celiac?

[Takala]

Yeah, but.... as if average run of the mill person is going to realize this. Another way of saying "gluten- related- problem."